Hello All

[Msur]

Hello all, I am new to these forums and fairly new to cystinuria myself. I was diagnosed with cystinuria recently and have endured about two years worth of kidney stones. Most of my kidney stones, while painful, have been small enough that I am able to pass them. My most recent bout with stones, however, has involved a shock wave lithotripsy, two laser lithotripsies, and a recalcitrant cystine stone the size of a golf ball. I have seen a nephrologist and am taking a diuretic and urocit-k as well. I have seen quite a few doctors concerning my cystine stones, five urologists, two nephrologists, and countless curious nurses. What I have gleaned from these visits is that, even among urologists, most doctors have very, very few dealings with cystine stones. They seem remarkably uninformed about this condition owing, I guess, to its infrequency. Anyway, I'm hoping to control new stone growth with urocit-k and a rediculous amount of water, but I most likely will have quite a few questions and quite a few more kidney stones in my immediate future.

Sincerely,

Matt

[Matt Lewis]

Matt, welcome to the group!!! We're glad to have you here, and i hope you find some good information from the threads and other members.

Please feel free to ASK AWAY! We're over 40 members strong now, so someone out there just might happen to have the answer you're looking for!

It is true that many doctors are just as ill-informed about the condition as newly diagnosed patients; most will never have an experience with someone with this disease. A good doctor will know how to educate themselves, however, or refer you to someone better suited for the job. I wish you the best of luck in finding someone who can provide the care you deserve!
And if/when you do, don't forget to mention him/her on the "Locate a physician" page so others can benifit as well!!

Again, glad to have you here!
Kind Regards,
Matt Lewis